Remembering Holly

Brighton resident Josie Jeffery is set to join Davina McCall on a 40-mile ride in memory of her sister Holly who sadly died from lupus aged just 19.

Josie has signed up to join hundreds of cyclists on Davina’s Big Sussex Bike Ride on Sunday, 12 June, and in this moving blog, she tells us why she’s fundraising in her sister’s memory…

In 1988 I saw my sister Holly being born when I was just 12 years old. My family lived in a bus and when Mum was in labour there wasn't really anywhere else for us to go! We made Mum sweet tea and fed her biscuits as she paced up and down the bus and occasionally squeezed our hands.

Back then in 1988 there were three of us. My big sister Amy and my little brother Arran; I was the middle child. I read my brother (who was just four at the time) a story to distract him, then he suddenly looked up and pointed to Mum and we saw our baby sister coming into the world. That moment fundamentally changed my life: as a young girl on the brink of teenhood, I now knew what happened to a woman when she was bringing a child into the world and it was actually really amazing! I fully believe that this helped me when my own child was born seven years later and my mother was there to make me sweet tea and squeeze my hand.

Holly was an amazing auntie to my three sons; she and the last of my siblings, Rosie, were still kids themselves when their nephews were born, and they spent most of their time together building dens and generally being silly. Life was full of laughter then. I bought a mini bus so we could all go on adventures together and we had many wonderful days of piling everyone and a picnic into the van and heading for the woods or a beach or camping.

I loved being a big sister and a mother at the same time and took great joy at seeing my siblings swinging my kids around on the beach and kicking about together but by the time my third child came, I got a bit restless and moved to Brighton 262 miles away from my family to go on my own adventure. I still visited every three months or so, and Holly and Rose came to stay in the summer. As they got older our relationship matured into an adult-friend zone and I was so proud of the women they had become. With only a two-year age gap Holly and Rose were inseparable and did everything together; one of their primary activities was giggling and being silly, like climbing into a zipped up sleeping bag and racing each other across the room.

Holly was enjoying becoming an independent young woman and planning her life but it all came down with a crash in 2007 when, aged 18, Holly was feeling unwell and collapsed. The doctors didn't know what was wrong with her and had to send for a specialist from Cardiff... it was all very scary. Mum called me and said Holz was in the Princess of Wales Hospital in Bridgend.

The doctor thought she had leukaemia because lupus mimics certain illnesses. When she was in the ambulance and at Morriston Hospital in Swansea her heart failed three times so they thought she had pleurisy. When she was transferred to Bridgend, they gave her a blood transfusion.

We jumped in the van that day and went to see her, stopping off at the supermarket to buy her a dressing gown and some slippers.

“'She has been diagnosed with lupus,” Mum said.

“What is lupus?” I asked with a fearful voice.

“It's really rare,” said Mum. I spent the journey from Brighton to Bridgend trying to research it on my rubbish phone. 

It was a relief to see her, smiles and positivity as usual, but she did look pale and tired. We played cards in her room and she let the kids play with the button that made the bed move up and down, we wandered round the corridors pushing her in a wheelchair with one of the kids on her knee, we then found the empty cafe and ate homemade salad from tupperware and drank tea from a plastic cup. My heart sank when we had to leave her. “It's okay, I have my crochet to be getting on with,” she said, gripping a crochet hook and an extremely long pointed green pixie hat she had been making for a friend. 

For the rest of that year she was trying to get to grips with her condition and the meds. Her mind, body and soul were being attacked and some days she suffered so much and she was a different person.

There is nothing worse than seeing someone you love suffering and there's nothing you can do to make it all better. When Holly was a toddler, if she hurt herself we would use 'magic cream' (an invented cure that lived in the air around us) - all you had to do was swipe your finger in the air and get some magic cream to rub on the ‘owie’ and everything would be ok. Not even magic cream could make her better now.

Our world shook when Mum called to say Holly had gone, just two months before her 20th birthday. I just felt numb as I handed the phone over to Steve to talk to Mum. We scooped the kids up out of bed and piled into the back of the van and Steve drove through the night to Wales. I sat watching the headlights on passing cars turn into stars through my tear-drenched eyes. I cannot even describe the feeling but it was like a light in the world had gone out and the colours would never be the same again.

Walking through the doors of the house was terrifying; that would make it real, to see Mum and Dad’s faces would confirm to me that this was not just a nightmare. I ran to my baby sister Rose, who was just 17 at the time. She was curled up in the tightest ball on the sofa, sobbing her eyes out, hugging one of Holly's hoodies. I didn't know what to do.  

The coming weeks were all in slow motion, nobody ate properly, nobody slept properly and I felt like I was on the verge of falling into a heap. Luckily there were invisible hands holding me up: my Steve and my dear friends. 

My parents’ hair went grey overnight, the world shifted into a new and uncomfortable place and we were all going to have to get used to the darkness of her loss whilst trying to cling on to the light of her memory. 

On the drive home to Brighton I shook myself and said, ‘I cannot fall apart, I have small children, I must try and get through this, I must find something to plough myself into, something that is a tribute, something that makes her feel close, that reminds me of the little things she enjoyed. Rosie came to live with us for three years which was such a comfort and we helped each other try to understand it all.

I began sowing wildflower seeds all over the city and beyond and set up my own business seedfreedom.net and wrote a book in her memory. But when that was done, I could feel the darkness come back so I set about running. Running made me feel good, it gave me space to power out my thoughts. I did a 10k run in aid of Lupus UK and raised £650 and I have never felt so proud of myself as when I crossed the finish line. During the run when I got tired and felt a bit desperate visions of running around with Holly on my shoulders when she was a toddler kept me going. 

I pledged to do another fundraising activity in her honour and came across Davina's Big Sussex Bike Ride with Action Medical Research which involves cycling around the beautiful Sussex countryside. Holly loved the countryside and nature, as do I, so it was a perfect fit for my next fundraiser.

Unfortunately when I signed up for 2015 I sustained a knee injury and had to cancel so Action let me bring it forward to this year. I will be doing the Classic 40-mile ride. Training with a dodgy knee has been challenging and I have had to take it easy but I have done a few 20-mile rides on the weekends and cycle around Brighton to and from work. I live up a big hill so that's been good training in itself!

Riding my bike gives me the same kind of head-space as running, it’s so therapeutic and helps cheer me up if I'm having a sad day. 

I feel so blessed to have my other siblings, my parents, my beautiful children and Steve, and my amazing friends who have let me cry and laugh and talk about Holly whenever I have needed to and who have sponsored my ride because they know it means so much to me. 

When I am finding it tough on the day of the ride it will be those people and my memories that keep me going.

Lupus is an autoimmune disease, which means your immune system produces antibodies that attack your body’s own tissues, causing inflammation.

There are two main types of lupus:

- Discoid lupus, which attacks the skin

- Systematic Lupus Erythematosus (SLE) which can affect your skin, joints and your internal organs including your heart or kidneys.

Holly had SLE lupus - to read more about Dr Kate Webb's study at University College London to help children and teenagers understand why they are affected by this rare and disabling condition, please click here.

If you’d like to support Josie’s fundraising efforts, please visit action.org.uk/tribute/holly